Facts About Facioscapulohumeral Muscular Dystrophy

Click here for the Spanish version of this publication.
Updated 03/2009

[cover]
On the cover: Barbara Williams of Clackamas, Ore., first had FSHD symptoms in childhood. Recent surgery has given her less pain and better use of her right arm.

Introduction

Questions and Answers

Does it Run in the Family?

MDA's Search for Treatments and Cures

MDA is Here to Help You

MDA is Here to Help You

The Muscular Dystrophy Association offers a vast array of services to help you and your family deal with facioscapulohumeral muscular dystrophy. Whether you’re an adult who’s just received an FSHD diagnosis, or the parent of a child with FSHD, the staff at your local MDA office is there to assist you in many ways. The Association’s services include:

  • a nationwide network of hospital-affiliated clinics staffed by top neuromuscular disease specialists
  • MDA summer camps for kids with neuromuscular diseases
  • professionally facilitated support groups for those affected, spouses, parents or other caregivers
  • assistance with purchase and repair of wheelchairs, leg braces and communication devices
  • evaluations for physical, occupational, speech and respiratory therapy
  • flu shots to help protect the respiratory system
  • equipment loan closets

MDA’s public health education program helps you stay abreast of research news, medical findings and disability information through educational speakers, seminars, videos, newsletters and more. Be sure to ask your local office for some of MDA’s latest publications, including “Services for the Individual, Family and Community.” Many MDA booklets are available in Spanish.

Everyone registered with MDA also receives Quest, MDA’s award-winning national magazine. Quest publishes detailed articles about research findings; medical and day-to-day care; helpful products and devices; social and family issues; and much more.

If you have any questions about FSHD, someone at MDA will help you find the answer.
Facts About Facioscapulohumeral Muscular Dystrophy

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